October 16 2013


I am reading “The Reason I Jump” by Naoki Higashida It is a book written by a 13 year old boy with Autism about Autism. I knew, given my social eccentricities, that I would find a conduit into his world, that I would relate on a more personal level but I did not expect that each page would prove a mirror. The level on which I am able to relate to this youth goes beyond intimacy, I might have given birth to this child through Asexual reproduction. I exaggerate slightly as I do not share his love of numbers. My first love is of course words. Although I did find that when taking Japanese the words did not come to me as easily as the syllabary. Years later I still remember how to read hiragana and katakana despite a pitiful and limited vocabulary. In second grade we had a class on sign language and to this day I still remember everything we learned. Discalculia has perhaps destroyed any love of numbers I might have fostered as I find numbers difficult to accurately perceive but I do love symbols.


I too get trapped in repetitious activities. I do not have a particular fondness for the vacuum cleaner but the sound lulls me into a semi comatose state (Sam hates noise so all our appliances are the quietest available versions we can afford). I find myself vacuuming for hours, Sam literally has to stop me and redirect my attention which is exceedingly difficult because I completely flip out when interrupted.


I too can walk for hours nonstop with no goal or destination in mind. Walking is a compulsion, a passion, my love of nature is fiercely compelling.


I too move at a significantly reduced pace when asked to hurry. I find that I feel out of place in my own body. I am so unaware of my body that I can place my body in some fairly horrific configurations without any awareness of the pain such a position should generate. I can’t ride a bike it is absolutely unfathomable to me how people ride bikes. In dance class I was always the worst student by miles.


I can eat the same thing everyday. I once ate pirogis for breakfast, lunch, and dinner for a week strait until Sam threw them away. If I ask for split pea soup for the millionth time, Sam will buy another soup to encourage variety. When I was in college the first time I ate the exact same lunch every single day despite other palatable options.


I too run off when something catches my attention, which results invariably in my getting lost. There are times Sam literally places my hands on the shopping cart and them wraps his body around mine to keep me from wondering. While it does make me feel like a child, there is comfort in his warmth.


I could go on and on as nearly every chapter is a revelation. While Asperger’s Syndrome explains everything not yet explained by Epilepsy, I am afraid of the diagnosis. I can’t explain exactly why this diagnosis scares me but it does. Individuals with both Asperger’s Syndrome and Epilepsy are more likely to have medication resistant seizures and have a 20% higher risk of Sudep (Sudden Unexpected Death in Epilepsy). My Epilepsy has already proven to be medication resistant I really don’t want to think of dropping dead inexplicably.


I think the fear comes from an overwhelming sense of powerlessness. How on earth am I to manage two serious and complex conditions? I suppose I am managing though I have no idea if I am managing well considering or if I am an epic failure. I have yet to obtain employment, which is a quintessential milestone for success. My job experiences in the past are as follows. I worked at the Humane Society with Sam during the summer many many years ago. I was so slow that he had to quickly do his work and then come finish mine. I worked in a ice cream shop for a day but the woman in charge kept screaming at me for being retarded because I couldn’t control my own arm. I worked at Burger King for a week but then wondered off and failed to return to work. I worked at the University Fitness Center this was my most successful job. I had only to clean the machines and it was only 2 hours a day. I was 25, my boss thought I was 17 or 18, when she found out I was actually an adult she attempted to promote me but I did not like the idea of my duties changing. Actually the thought of my duties changing freaked me out to the point I quit the moment she offered me the promotion. I didn’t mean or expect to quit but I couldn’t explain why I did not want the promotion.


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